Kindness costs – The hidden sacrifices nurses make for patients with TB

By guest contributor Carmen S. Christian, PhD

“I buy stuff for them to eat or to drink… We’re always having a sandwich or juice or so, then we can give to the patient. Then the patient will say ‘Sister, I’m hungry today’ and then we have some(thing) for them.” These are the words of a nurse who works with patients with TB. She was recently interviewed as part of our ongoing TB study in South Africa. Initially, we regarded this as an anecdotal finding that only applied to this dedicated nurse. However, as our interviews continued, it emerged that all nurses working in TB clinics had similar stories to share. They made sure patients were given something to eat before taking their TB medication. But what struck us the most was the common practice for nurses to pay out of pocket for this food.  According to the nursing staff that we interviewed, the most vulnerable patients would opt to collect their TB medication at the clinic every day simply to get something to eat. For many of these patients, it may the only food eaten for the day.

This altruistic nursing practice in TB rooms is not unique to South Africa. When I reflected on and shared these findings via a LinkedIn post,  one commentator mentioned that it resonated with the research narratives described by healthcare workers and people with TB in Kenya, Malawi, Nigeria and Uganda. A rapid literature search came up with no relevant results for journal articles investigating this important topic. This highlights that the financial sacrifices made by nursing staff for their patients has yet to be placed on the research agenda. I will not speculate on the reasons for this in this piece.

It is well-documented that the spread and management of TB is exacerbated by social determinants of health, like low socioeconomic conditions. Patients with TB in South Africa can apply for a form of social assistance known as a disability grant, on the basis of being  unfit to work for six months due to physical or mental illness. However, studies have shown that only 5% of drug sensitive patients with TB access the disability grant. A recent study – titled “I’m suffering for food”, explored access to social protection and food insecurity for patients with TB and their households in Cape Town, South Africa and came to a similar conclusion. Only a few participants with TB reported obtaining the disability grant while ill, with many reporting challenges and high costs of trying to access the grant.

In the Cape Town study cited above, access to nutritious food and food scarcity was highlighted as key issues for many patients with TB. During our interviews, nurses commented that many feeding schemes that offered food parcels to patients with TB were no longer available. This current situation was exacerbated during the COVID-19 pandemic when donor funding that supported high priority public health programmes in South Africa was drastically reduced. Post-COVID pandemic, the South African government implemented austerity measures that led to major budget cuts for public spending – fiscal allocations for supportive interventions like food parcels were further pinched.

A recent qualitative review of the fiscal stance towards socio-economic drivers of TB in South Africa found that national strategic policies expressed emphatic commitment to dealing with the structural determinants of TB. Despite this, the analysis showed that the commitment did not translate into adequate budgetary shifts to address the social determinants of health. These findings support the sentiments of another commentator of the LinkedIn post: “Section 27 of our (the South African) constitution guarantees the right to health care including reproductive health as well as emergency medical care. In addition, it also includes the right to food and social assistance to those that need it. People living with TB needs cut across all these. Political accountability should entail assessing the extent to which the state actively works on prioritising the needs of the worse off, which in South Africa is the majority of the population.”

Food insecurity negatively affects treatment adherence in TB. This perspective is shared by a LinkedIn commentator – “Nutrition strategies will be key to supporting adherence in TB care.” A qualitative study in Swaziland showed that some people with TB stopped their TB treatment as a coping mechanism because the medication increased their appetites and food was scarce in the household. These findings are echoed in a review of 44 studies on TB treatment adherence: in five studies, patients stopped taking their medication or absconded from the hospital when they could not access food; and in seven studies, access to quality food impacted treatment adherence too. It is clear that failing to adequately address food insecurity in the context of TB treatment sets us up for outcome failures. As another commentator on the LinkedIn post so eloquently put it –“To feed someone with TB costs way less than failed treatment.”

As a health economist, I know that the ‘kindness’ costs borne by nursing (and probably other frontline staff too) are rarely acknowledged and certainly not accounted for in standard costing analyses. If we consider how many lives have been saved because patients with TB were fed by nurses throughout their treatment, this oversight becomes unpalatable. We owe these nurses more than our gratitude and admiration – their kindness costs should be counted. The selfless and unacknowledged financial sacrifices that nurses make for their patients – often daily – is a phenomenon that needs to be further investigated, quantified, and taken into consideration when designing TB interventions that support patient adherence to TB treatment.

About the author:

Prof Carmen Christian is a development economist with a special interest in tuberculosis and a focus on public health economics. She works as an academic (Associate Professor), researcher (Principal Investigator) and consultant (Technical Advisor), and is based in the Economics Department at the University of the Western Cape, South Africa. Her other research interests include access to healthcare, health inequalities, health-seeking behaviour and the economics of infectious diseases.